093. Through The Easy & Tough, We Bloom with Jackson Gillies

Jackson Gillies is a musician who has been living with Type 1 diabetes since he was three years old. He has long been an advocate for T1D, as well as for Hidradenitis Suppurativa (HS) — a skin condition he was diagnosed with as a teen. Jackson’s drive to bring his music and HS awareness to a wider audience led him to audition for the 17th season of “American Idol.” He recently talked to BT1 about his experience and the exposure he hopes to bring to the communities surrounding both conditions.

Key Points from the Episode with Jackson Gillies:

• Jackson is a musician and student at a music school in London.
• His backstory is one of facing chronic auto-immune illness since a very young age, starting with Diabetes, and progressing to more over his life.
• He also delivered a TEDx Talk at age 17 about his journey with HS (Hidradenitis Suppurativa).
• Growing up, he did a lot of musical theater, and ended up taking up guitar while being stuck in bed during his early journey with HS.
• He learned from the internet, decided to enter a contest, which he won, and ended up a contestant on American Idol.
• Early on, he was on a path to try to get famous and get his name in lights, whereas post-American Idol, he realized he should pull back and really work on his message and focus before he should be trying to get his name in lights.
• Music and his lyrics are so personal to him, where what he writes about are all about him and his emotions, which he thinks helps his music resonate with others because of the personal connection that comes from what he’s giving of himself in the message.
• Going back to childhood, early on, Jackson was prone to ear infections and would get sick a lot.
• At age 3, his mother noticed some strange changes in Jackson’s health. Doctors blew it off, but his mother knew something was wrong, and forced them to test his urine.
• Sure enough, she was right, and they realized he had Type I Diabetes.
• When Jackson got his first shot, he just smiled and said, “Thank you.”
• Type I Diabetes is when the pancreas is attacked by the body itself, and does not make insulin as a result. This is different from Type II Diabetes, which is brought on as a response to lifestyle where the body becomes desensitized to insulin, so it stops working as it should.
• From age 3 to 4, Jackson got insulin shots, at which point he got a pump implanted.
• When he was just starting puberty in his early teens, he had a growth at the edge of his hairline on his forehead that no one knew what it was.
• He had a plastic surgeon remove it eventually, and his family moved to Florida shortly after.
• Within a few months, he ended up with several other of these growth, abscesses, growing on his legs.
• They got so bad that he couldn’t walk, but he tried to hide from people as he was embarrassed by it.
• After finally saying something to his mother, they struggled to get a diagnose, finally getting one from a Naturopathic Doctor.
• HS is a condition where the body struggles to process toxins internally, and tries to expel them through the skin in abscesses. To be HS, there needs to be more than one abscesses, and people can get abscesses for various reasons, so it takes 7 years on average for people to get a diagnosis.
• The Naturopath recommended cutting out many different foods that were basically all the typical things a teenager would eat – wheat/gluten, potatoes, etc.
• Not only was he dealing with the pain of the condition, but also dealing with the restrictions of the diet. He would eat well at home, but not at school, so the progress of the condition continued.
• Jackson’s future step-father, Jeff, was trying to help by working on different recipes that he could eat and would enjoy, but they still had limitations in Florida around access to things Jackson could eat, and the humidity made the condition worse and harder to live with.
• With some family in California, they decided to move out there to get easier access to healthier food options and a better climate for Jackson.
• Music had always been an outlet for Jackson, whether listening to it, performing it in theater or starting to play it himself.
• Jackson’s condition got better as the climate and his diet improved.
• To show how diet definitely impacts the condition, he slipped up and had a breakfast burrito at school, full of wheat and potatoes, and almost immediately got a new abcess.
• A little girl asked him what happened to his neck, and he thought of a brilliant, simple way to describe what’s going on inside someone with HS.
  • If you have an allergy, something comes into your body that disagrees with it, and you sneeze as a way to try to get it out.
  • It’s like that’s going on with some things he’s eating, and his body tries to get it out like a sneeze, but through his skin, and it gets stuck, creating the things on his neck she was asking about.
• Jackson shared a confluence of auto-immune issues in a parent and their kids having things like Diabetes or HS. His mother has autoimmune issues with her thyroid, and he has also had autoimmune and immune-response issues throughout his life.
• As a result, medical treatment can be tricky as the system is designed for some average person and assumes everyone is and responds the same, but that’s not the case, and creates complications.
• A dermatologist who is an HS expert back East saw Jackson’s TEDx Talk, and connected with him to try to help. She realized some of what he was taking (prescribed by other doctors), had things in them that aggravated his condition, like yeast.
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• Once his treatment plan was cleaned up similar to what he had done with his diet, things got better.
• It also lead him to want to pull back from heavily depending on doctors for guidance, and focused on his food and what his body seemed to need.
• Starting then, around 2 years ago, things have been improving. Many of his abscesses have cleared up, leaving only scars behind.
• He’s been able to re-introduce some foods, and knows the cues from his body to understand if he’s overdoing it in any area, and how to adjust back.
• You have to listen to your gut, figuratively and literally. It’s connected to your brain, and it knows.
• I asked about Jackson’s work to raise awareness of HS, which went back to his early experience with Diabetes.
• He had been in campaigns from JDRF, the Juvenile Diabetes Research Foundation, including doing photoshoots with Mary Tyler Moore.
• Once he had his diagnosis of HS, he found that there was nothing like that for building awareness.
• That’s what sparked his desire to spread the word, including doing the TEDx Talk, and how he’s been sharing his story publicly since his diagnosis. He’s hoping to save people time and suffering.
• With an average diagnosis time of 7 years, he knows how difficult that can be to live through, especially without having answers.
• There have been some really dark, long, defining moments that have impacted Jackson’s journey so much.
• But there are also small moments, like getting home late at night, realizing there’s no food in the house and he can’t just get takeout because of what it will do to him, so it can take hours before he has food put together he can eat.
• But in either the big or small tough moments, he will bloom either way.
  I asked if he was thankful for his experience with HS. Surprisingly to some, he is. It has lead him down a path to be able to express himself musically, have the maturity he has, or have clarity on what matters to him. In that way, yes, he is thankful and wouldn’t change things.
• Jackson quoted a song by the Avett Brothers, who are the reason he plays music himself. “Tell the truth to yourself.”
• To Jackson, this means, be honest with yourself and be aware. Don’t settle on anything too quickly just because it feels easy or good.
• The world is chaos, how could we make sense of anything. Our minds are too small to make sense of any of what’s going on here on Earth, so just focus on what’s in front of you right now.

Links:

• Website: JacksonSings.com
• TEDx Talk: “Bringing HS (Hidradenitis Suppurativa) Out Of The Dark” TEDxSantaBarbara
• Jackson’s Music on Spotify
• See Jackson’s audition on American Idol
• Facebook: @JacksonGillies
• Instagram: @Jackson.Gillies
• Twitter: @Jackson_Gillies
• YouTube